Author Topic: Decisions? Appt w Dr. Golfinos  (Read 3014 times)

Darlene

  • Jr. Member
  • **
  • Posts: 94
Decisions? Appt w Dr. Golfinos
« on: May 01, 2009, 01:41:43 pm »
I had my appt with Dr. Golfinos today.  Very nice, well educated surgeon but I am still in a quandry about what route to go

  At first he said with my size tumor 1.4cm (totally intracanicular) and it's location- mid fossa approach.  He did say because my hearing is still pretty good that I could also consider radiosurgery as a very viable option.

  Then he reviewied the current MRI and past MRI   (3mths apart) and he noticied that the tumor was seeming to grow toward the cochlear ( a little bit) and stated that because it was growing toward the cochlea that trying to save my hearing via either surgery or radiation would probably not be possible.    And stated that if this was him he would just wait till my hearing was totally gone and then have the translab done. He did not seem to expect my hearing to be good for very long, with this growth toward the cochlea.    In the interim I would need to get another audiogram and MRI done in three months. And also visit Dr. Roland (otolary-doc)  If things remain stable then just have the MRI done every six months.  Interesting to me was that my balance in his opinion was pretty bad (both he and I were surprised that I couldn't do the heel to toe walk) 

Has anyone had experience with a tumor growing toward the cochlea?  If so how did you treat it? 
Am I correct in my understanding that balance issues will be (eventually) solved with the cutting of the vestibular nerve and that balance won't necessarily improve with radiation?
Having to radiatate the cochlea will kill my hearing?
Is translab the least likely to cause facial issues?
AM I correct in understanding that the rate of recurrence after surgery and 5yrs of clear scans is less than .5%?
Are there any inherent risks in just watch and waiting till your hearing is gone?  I realize I could have translab now but why lose my hearing until I have to?   
Thanks for any information,
Darlene

DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

Keeping Up

  • Sr. Member
  • ****
  • Posts: 253
Re: Decisions? Appt w Dr. Golfinos
« Reply #1 on: May 01, 2009, 05:56:27 pm »
HI Darlene

I can't answer most of your questions - other than the last one - about inherent risks, at least from my perspective!

I have a small intracanicular tumor.  As I have learned, these are one of the better ones to have because they typically grow slower than the CPA tumors and are by their location the furthest from the brainstem, so cause the least 'serious' damage - i.e.impingement on the brain stem.  I am encouraged to hear you have such a large tumor and that it is still all intracranicular.

I am hoping to stay w&w for a very long time. I am practically asymptomatic - or at least the AN symptoms are so mild they don't slow me down (mild hearing loss and temporary/intermittent balance/light-headedness issues). I have spoken to my ENT several times - he is a proponent of w&w and has not told me of any inherent risks with watching & waiting.  He suggested my tumor could get to 1.5cm outside extra-canicular and still be in watch & wait - i.e. since the tumor is all intracanicular, I haven't even gotten to the starting line yet.  He views a typical AN tumor less than 1.5cm extracanicular no more difficult or risk to remove than a small tumor.  He is not confident in consistently preserving hearing - so doesn't encourage hearing preservation surgery as its success rates are rather low.  [ie. your wait for translab versus mid-fossa now - why risk hearing preservation surgery, when your hearing is good and the tumor is small/doing no harm.]

I also did have a consult with a GK surgeon - his reasoning was identical (other than he was anti-surgery). He suggested I wait until the tumor is much larger and my hearing has been substantially lost as GK will destroy hearing.  His view - research seems much more  positive on hearing preservation than the GK surgeon inferred - but will assume he is talking long term frames (maybe greater than 5 years).  He thinks I could w&w for several years.  AGain, his threshold for treatment for my type of tumor is probably closer to 1.5cm extracanicular (thus, again I haven't even reached the starting line).

My appointment with the neurosurgeon is June 3 - my first appointment - I was diagnosed in December so the Canadian medical system is a test of ones patience (but at least shows how non-critical my situation truly is - and I recognize that fact!)  So, I will be interested to hear what he says.  I will have had my second MRI at that point (6 mnths apart) which is May 21 so will have a clearer picture on whether this thing thinks it wants to grow.

Hope that answered at least one of your questions - I think the inherent risks of watching and waiting for the typical slow growing intracanciular tumor are very low and substantially out weight the risks of either surgery or radiation at this point.  Obviously consistent 6 month or 12 month follow-ups will be required while we stay in this regime, but it is highly possible to ride the waves for several years.  (My ENT thinks it is possible that I may be w&w for at least 10 years, and maybe for the rest of my life!)  I am 37 years old - so I expect to have a really long life yet.
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

Darlene

  • Jr. Member
  • **
  • Posts: 94
Re: Decisions? Appt w Dr. Golfinos
« Reply #2 on: May 01, 2009, 06:45:41 pm »
Keeping up,

Thanks for your help.  I have now had two surgeons who both do surgery and gk suggest Wait & watch.  I am very conservative when it comes to health risks so your simiilar experience and view point is very reassuring!   I know normally intracanicular is only 10mm and mine is bigger- but I must say I do have a big head  :D (can never find a hat to fit) so maybe that accounts for it or maybe just growing toward the middle ear??? 
Good Luck on the 21st and Jun 3, I will be interested to hear your outcome. 

Thanks,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

doinoc

  • New Member
  • *
  • Posts: 36
Re: Decisions? Appt w Dr. Golfinos
« Reply #3 on: May 01, 2009, 07:39:28 pm »
Hi Darlene,  I've been in watch and wait since 2002 and just now having to decide on what to do next.   It can be very confusing and mind boggling all the possible outcomes of each choice you have.  I'm guessing mine grew towards the cochlea since I woke up one morning in 2004 with hardly any hearing at all....just like that. I had heard that could happen but usually its more gradual.  my tumor is now 1.6cm and my symtoms are getting worse.  I also see others on this forum that have bigger tumors then ours and don't have near as many symtoms.  So like most of them say hear, each AN journey is different as are outcomes to treatments.  Sometimes I think it would be easier for it to be cut and dry....you have this ....we need to do this .... end of story.  But we do have the choice and those who are just newbies with very small tumors have the opportunity to see what progress is being made down the road before they have to decide what to do. I have my dr who wasn't so gun ho about radiation when i first saw him because of lack of long term outcome data and my age.  Now he has suggested to check out GK since i have no hearing  now.  Gk has more long term data then CK.  I had a consult at the House Ear clinic and they said they would suggest surgery because my main daily symtoms interfering with life besides hearingloss and tinnitus is balance.  I was diagnosed because of balance and my hearing was fine.  So his school of thought was continued problems with balance could be an issues after GK.  And then if there were regrowth the problem with surgury if needed after radiation is scartissue and increased risk to facial nerves.  It's doable but with more difficulty.  Radiation after surgery if there is regrowth is better.  Anyway as you can see so many opinions so many differnt points of view\.  My surgeon says if i go with GK and have difficulty with balance he can do a nonsurgical procedure to kill of the balance nerve so the other side can heal thyself without interference.  Translab is what House ear clinic suggested for me since there's no hearing and its the facial preservation approach and post surgical complications.  But I've seen others on here who have the other approaches and have done fine.  I think you have time still to keep your hearing and think through what is best for you and you life situation.  My balance is very precious to me so its been a very tough decsion for me.  I am a hair stylist for children and take care of a lot of special needs children and without balance I can't do it. 
    So sounds like you've been doing your homework and I think you're on the right track to your answer of what is right for you. 
Deb

Cheryl R

  • Hero Member
  • *****
  • Posts: 1800
Re: Decisions? Appt w Dr. Golfinos
« Reply #4 on: May 01, 2009, 09:35:59 pm »
Deb,   It sounds like you feel with surgery that you think you will lose your balance forever.     I am not sure if I was reading it right or if the balance issue was more with radiation.              I know with surgery most recover the balance well enough and are back to their normal way of life.    There are some who seem not to but usually those have had a real problem due to tumor location or large size.        Many are on the forum for a time and recover and are back to the way liife was before.              The worse is usually during the time at first when one is recovering and then slowly improves  but one is back to being able to do most of what they had before.           There can be some long term problems where you have to watch walking in the dark more or how fast one turns sometimes.    Varies with each person.                            There should be no  problem with returning to your job  from what it sounds like you do.    I can not say exactly how soon.      A month, 6 weeks? 8 weeks?       I was back to work as a nurse in 2 mos.                                   There are some who do have a work problem afterwards and depends on what the job was. 
       Good luck in your choice of treatment.                            Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Darlene

  • Jr. Member
  • **
  • Posts: 94
Re: Decisions? Appt w Dr. Golfinos
« Reply #5 on: May 01, 2009, 10:16:45 pm »
Deb,

Thanks for your help, I am impressed with how long you went with watch and wait. 
 I am sorry to hear about your balance issue when I spoke with the  Dr. today and if I remember correctly he did say that they sometimes see long term balance issues with GK but mostly with older individuals for some reason.  It would seem to me that with that option of killing the balance nerve maybe it wouldn't have to be a factor for anyone. 
 
 I really hope it doesn't stop you from your work, I was president for five years of parent support group of children with special needs and I know how important it is to have someone who can work with and understand the needs of differently-abled kids  So please know I am very hopeful that whatever your treatment decisoin you will be able to keep up your special work.

May I ask, do you regret your decision to watch and wait?  Would you do it again all things considered?   It seems pretty clear that  due to the location of my tumor, I will lose my hearing eventually no matter what course of action I take so I guess why not hold onto what I have for now.

 The hard part is every day I change my mind about what I want to do... Ahh the joys of having an Acoustic Neuroma
Thanks for your help and I will keep you in my thoughts and prayer for a quick, speedy and balanced recovery for which ever option you choose. 
Dalrene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

doinoc

  • New Member
  • *
  • Posts: 36
Re: Decisions? Appt w Dr. Golfinos
« Reply #6 on: May 02, 2009, 06:56:32 am »
Hi Darlene,  I'm not sorry i waited. I knew the possibility of losing the hearing but the chances of it being saved didnn't have good enough % for me to jump into surgery or radiation.  Fractionation was just sarted when i was diagnosed.  My tumor was only 7mm at that time. so i thought if it was possible it would grow so slow and have little complications i was up for the chance.  My kids are grown now and i don't have to take of their needs as teenagers,  So even though now its hard to decide I'm glad I waited.  I'm a great believer in the power of prayer and i'm a decesional prayer mode right now.  thank you for your added prayer in my behave and I will return the prayer to you.
keep in touch
peace
Deb

doinoc

  • New Member
  • *
  • Posts: 36
Re: Decisions? Appt w Dr. Golfinos
« Reply #7 on: May 02, 2009, 07:09:29 pm »
Cherly,   I meant that the surgery would be less problems with my balance issues then GK would.  I guess I've been over thinking possible problems afterwards and choosing a treatment that would have no adverse affects to my work and i don't think there really is a right answer for that.  Seems all outcomes different.  The thing I fear with my kids whose hair I do, that cannot sit still through a haricut, is really starts to get to me because of their movement and me trying to quickly get the job done it just sets me into a spin. Amd then my special needs children especially autistic children, haircuts are very stressful for these precious kids and i've always been able to help get them and their parents through it.  now my edge is gone.   I trip over myself when its real bad and have to walk away.  I have scissors in my hands and rfefuse to put them in danger.   So I love my work and those kids so I truely was trying to have a guarentee i would still be able to do my work.  But now even in w/w mode its becoming increasingly more difficult.  So this was a good week...little problems but coming off of a 2 month hard time.  so really tired right now and going to get in bed.  Hope to talk to all you soon.
peace
Deb

 


anything